This American Life - 895: Label Maker!

Episode Date: August 17, 2026

Labels are powerful. They can distill you down to a single word. They can get stuck on you without your permission. And sometimes, when they get taken away, they can upend your entire life. On this ep...isode: labels and the havoc they wreak. Visit thisamericanlife.org/lifepartners to sign up for our premium subscription.(00:00:00) Prologue: Sara and Ethan have been dating for 10 months. They see each other at least once a week, text pretty much every day, and have been there for each other through hard times. But they refuse to have the “what are we?” conversation. So what gives? Guest host Tobin Low looks into it. (5 minutes)(00:05:14) Act One: Last week, when Temporary Protected Status, also known as TPS, was cut off for Haitian immigrants, some 300,000 people had their lives upended. Marie, a Certified Nursing Assistant in Boston, was one of them. Producer Chana Joffe-Walt spent a week with Marie as she tried to figure out exactly when her very last day on the job would be. (21 minutes)(00:27:10) Act Two: Comedian Janet McNamara was walking off stage 15 years ago when the club owner asked, “Hey, have you ever been tested for autism?” No one had ever asked her this before, so Janet decided to look into it. (17 minutes)(00:44:08) Act Three: When you get down to it, labels are just our way of pointing out what we think is remarkable about other people. That’s Alfred Jung Lee’s argument. He’s been thinking a lot about how we describe each other, especially as he tries to describe his wife, who passed away from cancer. (10 minutes)Transcripts are available at thisamericanlife.org / This American Life privacy policy. / Learn more about sponsor message choices.

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Starting point is 00:00:00 A quick warning, there are curse words that are unbeaped in today's episode of the show. If you prefer a beeped version, you can find that at our website, This AmericanLife.org. From WBEZ Chicago, it's This American Life. I'm Tobin Lowe sitting in for Ira Glass. The story of Sarah Nathan's relationship starts with heartbreak. She had just gotten out of a 12-year relationship. He was separated after 13 years of marriage. Neither of them were particularly interested in jumping into something new.
Starting point is 00:00:30 too fast. But their mutual friends thought, hey, they have that in common. They're both in their 40s, both a little wobbly from their last relationships. They should date. Here's Ethan. I think they saw us both as like people who didn't know what they were doing and thought, maybe these two could figure it out together. That's both like sweet and maybe a little insulting. Yeah, yeah, I'm going to take it as sweet. They hid it off, kept seeing each other, doing dady stuff, dinners, museums, walks in the park. And as weeks and then months went by, they advanced to the stage of hanging out
Starting point is 00:01:06 with no particular plans. At one point, a kind of big thing happened. A friend of Sarah's died. Ethan knew how hard she was taking it, so he asked her, you want to go to a ball game, take your mind off things? And it felt nice to let him take care of her in that way.
Starting point is 00:01:23 It's now been 10 months. So you're in contact pretty much every day, You see each other regularly. You're not seeing anybody else. Is he your boyfriend then? No. Obviously, this is Sarah. What do you refer to him as?
Starting point is 00:01:43 I guess I use his name. Okay. And I will often say he's the person I'm sort of seeing. This sort of feels crucial there. Or kind of. Uh-huh. Or I guess I'm. There's always a bit of a qualifier.
Starting point is 00:02:07 Gosh. I think both of us have sort of avoid using the boyfriend-girlfriend terms. In fact, a couple weeks ago, they had a conversation about whether it was time to have the What Are We conversation. And they decided to put it off. Ethan and Sarah are your classic example of let's not put a label on it. You know couples like this. And I understand that people do this, but I'm always a little like, why are you doing this dance? Like, if it looks like a boyfriend duck and it quacks like a boyfriend duck, it's just a boyfriend duck, right?
Starting point is 00:02:41 Some of my friends will refer to him as my boyfriend, but... You're making a face. Not very comfortable with it. Why do you think that is? What does it bring up for you? What is the feeling? It feels like if we... put a label on it, gosh, we're going into the tunnel again. Like, it feels like it could last a long time, and that's a little scary. And if I'm someone's girlfriend, I want to be prioritized in a certain way,
Starting point is 00:03:14 and I'm going to be reciprocal in that is not something that I'm comfortable with right now. There are other considerations they're thinking about, like Ethan's daughter, who is 10, and still doesn't really know about Sarah. He's thought a lot about what putting a label on this thing with Sarah would trigger. If dad had a girlfriend, I think that that would feel very significant to her. Yeah, I think that that would, I think it would feel like a big deal to a 10-year-old. When I was hearing this described to me at first, I was like, to be honest, I was like, oh, this sounds very, like, teenager-y, immature.
Starting point is 00:03:56 like we don't want to call it anything. And now the more that I've talked to you, it's like, oh, it's a very mature and sort of being honest with yourself about what you want and what comes with putting a label on it. Oh, yeah. Absolutely. Because there's expectations. And having no expectations is so much nicer right now.
Starting point is 00:04:23 I get what she's saying. Labels, they're powerful. They can distill you down to a single word, can get stuck on you without your permission. I still think about the day when my dad introduced me as his husky boy. I thought about that label for years. Today, on our show, we have a story of a woman who spent more than a decade trying to get a particular label put on her.
Starting point is 00:04:48 And we see what happens when a label that's holding someone's life together gets peeled away. And also, today, I have the all-powerful label of host, so I am commanding you to stay with us. It's This American Life, Act 1, Last Shift. The label being assigned in this first story is temporary. It's a label that can feel meaningful and definitive. You know the thing will end, whatever it is. But temporary is also a flexible term. Your life on earth is temporary, but it can go on to be.
Starting point is 00:05:35 for a hundred years. The temporary label plays an important role in the U.S. immigration system for something called temporary protected status, TPS. TPS is a status given to a country all at once. It allows eligible people from that country to live and legally work in the U.S. if their home country has become unsafe or unstable, for instance, because of war or disaster. And if war or disaster goes on, TPS can be extended. For some countries, it's been extended for more than 25 years. Wars can last a long time. A 30-second earthquake can cause damage that takes years to recover from. Last week, the Trump administration succeeded in ending TPS for people from Haiti. A judge removed the last roadblock. It affected a huge number of people, more than 300,000 Haitians. Many have been here in jobs and lives far longer
Starting point is 00:06:31 than anyone would consider temporary. So, 300,000 people were facing an end all at once. Hanna Jaffe Walt spent time last week with one of them at her job, a woman named Marie. And no one, including Marie, knew which day would be her very last on the job. Here's Hannah. I'd heard about Marie before I showed up at the nursing home in Boston. Her boss told me he was losing his best CNA,
Starting point is 00:06:58 the pride of the building, he said. A CNA is a certified nursing assistant. Families love Marie, he told me. When I walked in, the senior nurse leader, Florinette, walked me up to the second floor, pointing out details and people along the way. And she pointed to a room and said, the woman staying in this room refused to be moved from her chair to the bed by anyone but Marie. If Marie is not here, we have to make sure that we go and tell her why Mary is not here. Why? Why did you? Because she's used to Marie.
Starting point is 00:07:31 She's used to her, and Mary treats her with respect. So she really is an exemplary CNA. I've worked with many CNAs. I know everyone. This is Marie. Oh, hello. How you doing? I've heard so much about you.
Starting point is 00:07:48 Oh, really? Well, this is another Marie. Yes. This is another Marie. Apparently, there are a lot of Marie's in this building. Marie Gillette. Marie Claire, Marie France. I asked Florinette, how much of the staff here is Haitian?
Starting point is 00:08:05 And she says, oh, we all are, except for, and she scans the floor. Her. She is not Haitian. But I think I see three CNAs already, and all three of them are Haitian. And then, a small woman in glasses, gold hoops, ponytail, and pink scrubs, walks purposefully down the hall toward us. Hannah, here is your movie. Nice to meet you. I've heard so much about you already before even meeting you.
Starting point is 00:08:37 Okay. I'm here a long time. How long have you been here? 12 years. Do you know that you have a reputation here as being one of the best? Yes, I know. But Marie is not particularly interested in talking about this or dwelling on her talents. Marie's not a dweller.
Starting point is 00:08:59 For a person who's a star, she's the opposite of flashy. She's focused, quiet, exceedingly polite, but I'm asking questions and I can tell she's distracted, glancing at the rooms behind me where her residents are. I have somebody in the bathroom now. I cannot stay for too long. Okay, okay. Okay, thank you.
Starting point is 00:09:18 Thank you for coming. Oh, I'm so glad to be here. From there, Marie is in motion, and she invites me to follow her. her, from one resident to the next. I'm coming one. I'm coming. I'm coming.
Starting point is 00:09:32 In and out of bathrooms and linen closets, between bedsides, humming evangelical hymns to herself as she changes sheets. And cleans up messes. I thought we were going to talk about this huge change that was about to happen in Marie's life, about what is likely her last week on this job. But actually, it seems like I'm going to watch her do her last week on the job. And the other nurses and CNAs are watching me and my microphone and asking each other, what's she doing?
Starting point is 00:10:11 She's following Marie? Why? Because she's good at her job? And then they want to talk and add on, saying, I can also tell you how good Marie is at her job. She never say no. She always be there for everybody. She's just really special.
Starting point is 00:10:32 She knows all their little quirks, and, you know, she'll be training someone and say, you know, they like a sock on their left foot but not on their right. And, you know, she remembers all those things that you don't have to remember to do your job. She's great. And do you know what's happening with Marie this week at the end of this week? I do not, no. I get out of the conversation awkwardly. and have a couple more moments just like this, where I gather, bit by bit,
Starting point is 00:11:02 that nobody here knows the major thing that is happening in Marie's life. Marie has invited me here, knowing I'm doing a story about people on TPS, about her job ending. But the people she works with don't know her job is ending, or that she's on TPS. Even though most people who work here are Haitian. Some of them are on TPS, like Marie is, but most aren't.
Starting point is 00:11:26 A woman on staff named Nancy told me, we give each other privacy. We don't ask question directly because we don't know who have it, who doesn't have it and things like that, you know? So we just take talks as a group. Nancy said the day that the Supreme Court allowed the Trump administration to end TPS for Haitians, the staff got together at the end of the day and talked about how sad it was that TPS was ending, how scared people were. She said Marie in particular was very sympathetic in those conversations toward our other co-workers who have TPS. But Nancy clearly did not know Marie is one of those co-workers.
Starting point is 00:12:08 You know, and she was feeling for everybody else. Everybody was talking about it. Especially Marie, because she's very caring like that for everybody. How's it going? Good. Yeah? I catch Marie coming out of a room and pull her aside for a minute. And your coworkers have been asking what I'm doing.
Starting point is 00:12:32 And I've been saying I'm following you. And nobody seems to know about TPS and that stuff. Do you want me not? I have not said anything. So you haven't talked to people here about it. No, I don't want to talk to them about it. Okay. Can I ask why?
Starting point is 00:12:52 I just don't. Yeah. Okay. If something happened, I cannot come. I will take. I tell them, but for now, no. Yeah. If something happens, you would tell them on that day.
Starting point is 00:13:07 Is that what you mean? Yeah. Okay. I'm not going to, after 12 years, I'm not going to just disappear. No, I will tell them. But for now, no, I don't tell them anything. They don't know anything about me. I learned the more I talked to more people that this silence is common.
Starting point is 00:13:27 There were so many people on TPS. moving through their workdays in restaurants, airports, schools, quietly knowing it could end at any moment and not telling anyone. Over 300,000 Haitians on TPS. That is so many people. As immigration statuses go, temporary protective status strikes me as a very strange one. It's not an employment visa where there can be a path to a more permanent status like a green card. TPS offers no path. It leads nowhere. You can have it for years. You can have it for decades. It can be terminated at any time.
Starting point is 00:14:15 The executive branch has discretion to offer TPS and discretion to take it away. With other immigration statuses, there's a process. There are steps to take and a system for appeals. TPS is more like a gift from the king, just a thumbs up, thumbs down kind of system. Haiti is arguably more dangerous than it was in 2011 when Marie was granted TPS. But President Obama was into TPS for Haitians back then, and President Trump today is not. So it's like a vibes-based immigration status? When I asked Marie how she was thinking about TPS, she'd just shrug. What's there to say? What can I do?
Starting point is 00:14:59 She told me in Creole through an interpreter. I understand that's a lot of but I understand the danger that's hanging, but there's nothing else I can do. She doesn't have a lot more to say about that, and maybe there just isn't a lot more to say. So how was this going to go, the actual end? For weeks, it was unclear when exactly
Starting point is 00:15:29 the TPS termination for Haitians would go into effect, like what day. And employers were constantly refreshing government websites and checking the news to try to figure out when to tell their employees they couldn't come back. And how should they do it? Marie's boss, Colin, told me he was trying to figure out what was the least disruptive, least public way to do this that would protect his employee's privacy. Should he just take them off the schedule? Put them on PTO and tell everyone they're on vacation and then they just won't come back? Should he do that now? Should he wait? The
Starting point is 00:16:06 Deadlines kept changing. TPS was ending on Friday. Then it seemed like maybe it was Monday. But at the end of the day on Monday, I called them and it seems like maybe it wasn't Monday. I have no idea. I have no idea what's going on right now. I've heard nothing. It feels like, yeah, today is the date, but I'm not getting anything from, you know, a government source that says absolutely it's the date. Is there like someone to reach out to? I can't answer that question without being sarcastic. I mean, I don't know that there is somebody. Tuesday, I walked into the nursing home at 2.45. I saw Colin on my way into the building, sitting at his desk on the first floor by the entrance. Button down, large beard, he's 40 years old.
Starting point is 00:17:03 I tell Colin, I talked to Marie and said I'd be here today for the start of her shift at 3. and he said. I did meet with HR today, and we have made a company-wide decision that at this point we are going to take anyone affected by TPS off the schedule. The lack of guidance, we'd be like we have to remove
Starting point is 00:17:21 them from the schedule. Wow, okay. So is she working today? She's working today. She's working today. Did she know that? I have not talked to her yet, no. I'm waiting for Maria to come in. I'll let her get settled, then I'll have a conversation with her, probably around four or four
Starting point is 00:17:37 five o'clock. How come you wouldn't just tell her when she gets here? I don't think it's right to kind of grab somebody walking through the door. Hey, you're walking through the door. So I want to let her settle and kind of have a normal chain and then I'll kind of sit down and have a conversation with her when we both have time and space to do it. But I do want to have a face-to-face conversation. Meanwhile, Marie is already here. She's upstairs. She came in through a different door. Her coworkers are greeting her as she sets up. Hi, beauty. Why are you? She's in lavender scrubs and a gold and silver head wrap, arranging her cart for her shift. Marie doesn't just grab one of the pre-stocked carts.
Starting point is 00:18:19 I like to fix my card. I have to fix it. You have to do it yourself. Yeah. Yeah. I know. I put towels, pad, sheet, gown, pillowcase. All of a sudden, everything Marie is doing becomes the last time she will do it,
Starting point is 00:18:37 counting the blankets and stacking them neatly on. the middle shelf. Fitted sheets, diapers, and cream go on the top shelf, pushing her cart to room 101 as the morning shift heads out. Okay. Bye, Albert. Hi. Hi. Hi.
Starting point is 00:18:53 See, thank you. Checking on each resident. Hi, Marie. How are you? I didn't see you yesterday. It was my dear. Oh. I like your silver.
Starting point is 00:19:07 Thank you. Pretty. You got to watch out the sun. The sun, put the sunglasses on. Next door, room 100 is full of visitors. Marie maneuvers quietly around the family, arranging sheets, wiping surfaces, filling watercups. This job is a series of endless, small gestures. It's delicate, it's close, difficult work.
Starting point is 00:19:31 Marie is both productive and invisible. She preps a bath and then gently guides the family on how they can be helpful as she washes and changes their 94-year-old mother. No, not that. Not that. Okay. Okay. Good.
Starting point is 00:19:59 My mom. Mama, mama, we're just helping you, okay? Marie is on her way out of Room 100. arms full of dirty linens when Colin enters the hallway to her unit. He walks toward her. Hey, Marie. Yeah, I want you up? Good.
Starting point is 00:20:20 But then, keeps going. He walks right by her. It looks like he made a last-minute calculation that this is not the time. Marie rolls a cart of soiled linens to the next room, pulls up next to a coworker and whispers to her, asks her where another CNA is today. Marie says, did she call out? The coworker says yes.
Starting point is 00:20:42 I think it's about the TPS thing. They closed it. Marie says that's what I heard. Then a call button lights up. She heads toward it back down the hall. You okay? Is it to be changed? Okay.
Starting point is 00:20:57 Then she's on her way out of that room, and I interrupt. And I ask, have you checked in with Colin? He told me anything happened, you will call me. He saw me when he came here earlier. But we did not talk. Okay. And you haven't asked. You haven't asked him anything.
Starting point is 00:21:22 No, no. No. I don't want to embarrass him. Why would it be embarrassing for him? Because he doesn't like me to leave. He doesn't want you to leave. Yeah. Yeah.
Starting point is 00:21:38 Yeah, he's not happy to see me live. I'm not going to ask him anything. Next to us, a man in the hallway with bright yellow socks has been using his long legs to drag his wheelchair back and forth, saying, I don't know, I don't know, I don't know. And a nurse leans close to Marie and says, could you help my friend with the catheter? For the cadetia?
Starting point is 00:22:05 Yeah. Yeah. Come, come. Colin comes by again. Glances in the rooms, but Marie is in the bathroom. Pull the pence down. She empties the catheter. As this is happening, Colin does a lap.
Starting point is 00:22:34 Marie pushes the man back into the hallway and Colin spots her coming out of the room. But the man with the yellow socks is agitated and pointing. at his pants. He wants Marie to change his pants, too. Oh, you want two under the pants? Come. So they're back into the room. Okay, stand up, Papa. Take your time. No, no, don't slide. Colin disappears back downstairs. How do you end a 12-year career without interrupting, without disruption, without any
Starting point is 00:23:21 noticing. Colin is looking for an opening to do this quietly, but there is not one. This is a person who is busy and needed. CNAs are hard to find and hard to keep all over the country. The average time people stay in these jobs is two years. And here's Marie. Her boss doesn't want her to leave, and she doesn't want to leave. He doesn't want to embarrass her, and she doesn't want to embarrass him. This is not the version of removing people that we've seen so much of in the last year and a half. It's not people grabbed in public, pulled out of cars, in dramatic, sometimes violent videos. This is a silent play, being performed in workplaces across the country. The quietest ending everyone involved can possibly pull off.
Starting point is 00:24:11 By 5.30 p.m., when the dinner trays arrive, Marie is moving between residents, arranging bedside tables, delivering food trays. A visitor tells her, we're going to head out now. My grandma's alone. Keep an eye. You're living? Yeah.
Starting point is 00:24:31 She'll be there by herself. Okay. All right. Okay. Okay. Okay. Okay. Okay.
Starting point is 00:24:39 Marie reassures her. Then spots a man who's come to have dinner with his wife. Marie finds a folding chair, places it behind him without saying anything, and keeps walking. Meanwhile, Colin is on the second floor
Starting point is 00:24:53 now. And he's not leaving. I can hear him faintly somewhere on the other side of the nurse's station talking to some guy about printers, I think. At 6 p.m., Colin just walks straight to Marie's unit and scans the area. He sees her carrying empty dinner trays. He says quietly, hey, Marie, you got a minute? Sure, she says. She places the trays down and follows him down the hall. They go into a room with an interpreter. It takes seven minutes. Colin doesn't want me to record, and when Marie comes out, I don't turn the recorder back on. She says to me, well, they're taking me off the schedule, for now, until he has more information. This is maybe the end. I tell her I'm sorry. She says, they said I can go home now or finish my shift. It's up to me. I have the choice. And then
Starting point is 00:25:49 Marie does something I have not yet seen her do. She talks about how good she is at this job. She says, when I started here in 2014, my salary was very low. Every year, they saw the way I'm working and the work I've done, and every year they gave me more. Right now, I won't tell you how much I make, but it's double where I started. I tell her, I'm sure you deserve it.
Starting point is 00:26:14 She gets choked up and says thank you. Then she says she's decided to finish her shift, and she should get back to it. She stands up and walks back down the hall. Hannah Jaffe Walt is a producer on our show. Coming up, a comedian walks into a bar and walks out with a medical mystery. That's in a minute from Chicago Public Radio when our program continues. It's This American Life.
Starting point is 00:27:02 I'm Tobin Lowe sitting in for Ira Glass. Today's show, Label Maker, a show all about the power of labels. We're at Act 2 of our show, Act 2, Diagnose. me, maybe? So the whole reason I've been thinking about labels lately is because of this next story we're doing today. It's about Janet McNamara, very funny comedian, who had this odd thing happened to her 15 years ago when she was first getting started. What happened was this one night she's performing at a comedy club in Boston, where she's proudly from, I think all Irish Catholics are. Anyway, she gets off stage, goes to the green room, when the owner of the club stops her.
Starting point is 00:27:42 he just kind of said like out of curiosity what's that thing when you look up in the air and you dart your eyes and I do this thing I have really bad memory recall so I look up in the air a lot when I can't think of a word or I can't think of what I'm going to say next and I said that's what I do when I'm thinking
Starting point is 00:28:02 and he said have you ever been tested for autism and I said no I've never considered that I'm autistic before literally as nobody has ever ever said it to me before. And where was this comedy club? It was called Dick Dardy's comedy vault. And this guy, Dick Dardy, he's the first person who asked me if I was autistic.
Starting point is 00:28:24 Oh, it was the namesake of the club. Yeah. He named a club after himself. Yes, correct. Janet kind of brushed it off, thought it was sort of funny. And she is a comedian, so she started getting on stage around Boston, telling the story about this guy asking this question out of nowhere. You got laughs.
Starting point is 00:28:43 But also, after the show, people would come up to her and say, hey. I'm autistic just to let you know you're also autistic. They would say it that bluntly. Yeah. And how would that feel? How would you react? I would say, I don't think I am. Janet says, as a kid growing up in the 90s, she'd been tested many times for learning disabilities, for anxiety. Never once did any of those medical professionals say the word autistic.
Starting point is 00:29:16 When she talked about it with her family, her friends, they'd say, yeah, it's a little weird that you get your haircut in slow increments so no one says, hey, you got a haircut. But mainly, they said, you're not a statistic, you're from Boston. But the fact that people kept saying it to her after shows, it raised a curiosity. She thought, it's probably nothing, but what's the harm in asking my psychiatrist if he thinks it's possible? Here's Janet talking on stage about what this all led to. It was when Asperors was still a thing. It's not a thing anymore. Now they call it the autism spectrum.
Starting point is 00:29:55 They unnamed it. He was a Nazi. Asperger's was a Nazi. Yeah, read a book. I remember I took the test, and the guy, he just looked up from his notebook, and he goes, well, people with Asperger's generally have above-average IQs. So I'm not smart enough to be mildly autistic is what that doctor told me.
Starting point is 00:30:46 This, again, was her actual psychiatrist. Janet decided to let it go, partly because this was back in the 2010s. And the idea of an adult getting tested for autism, it just wasn't in the air the same way it is now. She thought, okay, that's it. No need to keep pushing for a test. So for years, autism was just a funny bit on stage, part of her stand-up.
Starting point is 00:31:10 But off-stage, Janet had a day job, and what was happening there would turn out to be not so funny. Offstage, Janet had found what she thought was the perfect job. She was an accountant, worked her way into it after being a bookkeeper for a plumbing company right out of college. She liked accounting because she was essentially a problem solver. looked at ledgers, Excel spreadsheets, pointed out where there were errors. And her boss loved her because Janet got her job done quickly and efficiently. No small talk, no bullshit. She even got raises regularly.
Starting point is 00:31:48 That is, until one day she got a new boss, one who liked small talk, wanted more group meetings, more socializing amongst coworkers. Early on, this new boss asked Janet to meet one-on-one so they could get to know each other. And she said, you know, I, of two kids I enjoy hiking and then she turned around and showed me her two kids with a she showed she showed me she she turned around and picked up a framed picture of her two kids and went to hand it to me and I just said I could see that from here when I walked into her office I saw the pictures of her kids I immediately knew when I walked into her office she has two kids they're about 12 years old, the boy's older than the girl.
Starting point is 00:32:33 Okay, cool. I know all this information. I know this. I got it. And then she just tells me verbally and then hands me the picture. And I'm like, I already know this. Like, why are we talking about this? You have a picture.
Starting point is 00:32:48 That's why you have a picture on your desk is so that people don't start asking you if you have kids because it's a picture on your desk. Janet talks in her act about how things started to sour for her in the workplace. I was having a hard time at work at the time. I was having a hard time at work because of my personality. Yeah, they said I was rude at work. They said I had bad tone. They said I had bad tone in my emails.
Starting point is 00:33:14 I was like, how could you have bad tone in an email? I wasn't singing. I was like, you people need to relax. I told my boss to relax during a performance improvement plan. And even though she joked about it on stage, it was serious. seemed like she might lose her job. And what made it so difficult was that it felt like she wasn't being asked to improve her work.
Starting point is 00:33:46 She was always good at that part. It was like she was being asked to change her personality, her fundamental way of being, which, how do you even go about fixing that? She became so anxious and stressed about it. She took medical leave for a while, hoping she could figure out a solution. And then she went to talk to a doctor about what that might look like. Like a more private desk away from the chatter of the office, the ability to sit out those meetings with large groups of people.
Starting point is 00:34:13 She asked the doctor if he could help her ask for these accommodations, and he said, those sound like what you'd ask for if you were autistic. Again, that label. Janet decided to look into a diagnosis again, this time because the need had become dire. Janet goes for her first official autism test, which this time was an actual real-deal test. Testing for autism, by the way, is complex,
Starting point is 00:34:43 because there's no blood test. Instead, there are usually multiple sessions during which the tester is looking at social interactions, sensory issues, repetitive behaviors, or fixated interests. And then they take all of this into account to assign a diagnosis, which is what Janet went through this time. I don't know if anybody's ever had one. It's like this whole thing.
Starting point is 00:35:04 It's like a three-day thing. You look pictures of people and they're like, they look happy, they look sad. And I was perfect. I had everything perfect. And I didn't get the diagnosis. Like I said, I didn't get it. And he knew I wanted it too.
Starting point is 00:35:21 I didn't get it. And I'll tell you what happens. At the end of the day, the guy he just came back, and he just looked at me right in the eye, which I did not care for. I swear to, I swear, I swear, he just looks at me right in the eye. And he goes, he goes, he goes, you are so close. I swear to God, he goes, you're so close.
Starting point is 00:36:00 You just didn't quite hate all the criteria. And the criteria didn't hit. The only reason why I'm not autistic according to him is because the tags in my shirts don't bother me. Yeah, I don't have sensory issues. I was pissed. I was out ready to go back to work and be like, hey, I don't have to look at you.
Starting point is 00:36:25 It's not that I'm rude. It's that I don't understand. It turns out I'm just rude. You can tell that I'm rude because the tags in my shirts don't bother me. And that's the difference between rude and autistic. It definitely felt it felt like I had no choice but to change. It felt like I had no choice but to start playing the game,
Starting point is 00:37:04 which is talking about the weather and saying hi to people. And I did like start learning people's kids' names. How long do you feel like you were able to keep that up? at that job specifically. Oh, like three months. My brain just wasn't, it's so hard to describe it. It's probably what dementia feels like in that you know this isn't hard,
Starting point is 00:37:31 but your brain just can't do it. Like, I just couldn't function. Janet cycled through several corporate jobs after that. She said she'd do well, but then hit a wall as the demands of interacting and socializing would increase. She'd have to quit or face being fired. That's the cycle Janet's been in for the last decade, trying to avoid situations in everyday life that would make her uncomfortable.
Starting point is 00:38:00 But then when they do happen, talking about them on stage for laughs and how she still can't get a fucking diagnosis. So she's just kind of been toughing it out. Until recently, when she had an experience that flipped her thinking about everything. She took a kid to the movies, a kid she was babysitting, a kid she knew well. And at the movies, this kid started to cuddle with her, as little kids did. And it was so uncomfortable to me that she was stroking my arm. But I also understood that it was a little kid and that you can't just tell a little kid to like, like, I understood that like it was like her way of showing affection. And I just felt so stuck.
Starting point is 00:38:43 And I started like crying. Because you had to deal with it. It was your problem to deal with. I felt like I'm the adult. I just need, I just need to like take this. Janet went from discomfort to just being flat out mad at herself. How awful can you argue as like a person if you just want to say to a little kid, like, stop touching me. Like stop cuddling with me.
Starting point is 00:39:08 Stop showing me affection. Like it just doesn't feel good on a human level as a person to not want to cuddle with a little kid. and for that to be an overwhelming experience. She told all this to her current therapist, and her therapist said to her, I think we should revisit getting a diagnosis. I think it's right for you, and the other testers got it wrong.
Starting point is 00:39:36 Janet was ready to stop blaming herself, so she agreed. It was very much a, maybe there's nothing wrong with me, maybe my brain is just wired different, and maybe I need to not beat myself up. And that's when I interviewed Janet, when she was trying, yet again, to get a diagnosis. When I talked to her, it was right before she was about to find out her results.
Starting point is 00:40:02 When they did finally come in, she was standing outside a bar. It was 11 p.m. she opened an email with a report. And then, the next night, she went on stage in Portland, Maine, and dropped the news. And the lady was like, I don't know what's going on, but you're definitely autistic. She was like, you're autistic because you are interested in people and you're just not interested in things that are boring and you're not interested in boring people
Starting point is 00:40:36 who don't do puzzles correctly and she said, she said, I have a rigid personality. I'm rigid. And I said, I'm not rigid, I'm just most of the time right. And we talked about how much, My least favorite thing my therapist says, sometimes my therapist will be like, hey, two things can be true.
Starting point is 00:41:04 And I'll be like, yeah, I agree two things can be true. But in this case, one thing is true. The next time I see her, she tells me she's pretty stoked about it. But not for the reason I thought. She tells me about a recent experience interacting with a woman in a class she's taking. I sit in a specific seat every day. And I walked in and she was sitting in my seat. seat and she said to me, I'm sitting in your seat, you want to move. And I said, no, it's
Starting point is 00:41:38 okay. I'll sit over here. And she was like, are you sure? And we had this like back and forth. And I actually said, actually, I really want to sit in that seat. Can you move? And she moved. And she wasn't upset at all. She was perfectly fine with it. And I've just never felt that scene before where somebody's sitting in my seat. They saw my face. They saw my face. They thought I was distressed. They didn't see it as a control thing or like I'm taking it per like they didn't take it personally that I was like you're in my seat. Yeah.
Starting point is 00:42:12 Like it felt very good. Yeah. And there's no way she knew I was autistic. There was just something about the way I approached it, which is that I understood I think six months ago I would have said she's an asshole. She's sitting in my seat. What's wrong with her? Why would she sit my seat?
Starting point is 00:42:32 I would have taken it personally like she was fucking with me, or she was messing with me by sitting in my seat, as opposed to knowing that it's something that I'm specifically sensitive about, that I want to sit in the same place. So, yeah. It seems like it brings up a lot of emotion for you. Yeah, it's weird. It's like a different way of feeling seen,
Starting point is 00:42:55 even without telling people about the diagnosis. And I, there's something different. I don't know exactly how I'm approaching people differently, that they're not taking it personally, that their behavior is affecting me. I had no idea that it would be so different. And I didn't realize that you don't even have to tell people. I'm just the way I'm approaching people is different. It's true. When we sat down for this last interview, we were waiting for.
Starting point is 00:43:32 the studio to be set up, and she said, I'm fine if we don't make small talk while we wait, pretty matter-of-factly. And I understood. So we sat there in a very comfortable silence. Janet McNamara is a comedian. You can watch her full special, Not Smart Enough on YouTube.
Starting point is 00:43:59 Act 3, The Last Description. You know, when you get down to it, labels are just our way of pointing out what we think is remarkable about other people. That's writer Alfred Jung Lee's argument. He's been thinking a lot about what we notice in each other, especially as he tries to describe someone very close to him. Here's Alfred.
Starting point is 00:44:29 Not long ago, I was reading in a magazine profile, a description of a person who, quote, has a prodigious white beard, wavy gray bangs, and dark beetling eyebrows. A photo of the person was included, and as I looked, I admired the efficiency of the description. It did not say that the man had two arms and a nose. These details were assumed.
Starting point is 00:44:52 Reflecting on this, it occurred to me that when one describes a person, one is also describing how that person deviates from the norm. What makes them different from everyone else? Recently, someone I never met was supposed to pick me up from an airport in the Midwest, and I offered a succinct description of myself. Asian guy with too much luggage, I texted. I walked out of the airport. towing two suitcases, a carry-on, and a backpack.
Starting point is 00:45:20 I heard a stranger shout my name. I was recognized before I'd even made it to the curb. Description draws attention to what is different about a thing. Asian guy with too much luggage is a good description in Cedar Rapids. Less so in Seoul. The greater the focus on what is most different, the better the description. In an online support group I attended for spousal loss, People often describe their dead spouses.
Starting point is 00:45:48 The descriptions usually followed a formula. The points of variation included their job. The dead spouse was an accountant, a store manager, a health care worker. In personality, they were stubborn or loved to joke. There was a woman who had liked motorcycles, a man who had been a tender father to kids who were not biologically his own. Sometimes we shared pictures. Even as I looked at the pictures and listened to the descriptions,
Starting point is 00:46:18 I found it hard to understand that they were once alive. When someone described their spouse as stubborn, I took it to mean their spouse had been more stubborn than the average person, but I wasn't sure what this really said. Most of a description goes unsaid. Lately, my reality has transformed without my noticing, and I have been struggling to describe it. My father called me the other day from Korea, and it gave me a chance to try.
Starting point is 00:46:47 I described the weather in my new hometown in the Midwest, the one where I'd been picked up at the airport, saying that it was in the 70s at the moment, late in the afternoon, that I was 10 minutes from campus, where I decided to go back to school for a writing program, and that the city was hilly and not flat. He asked about my new friends and classmates, and I told him what I've been telling everyone, mid-20s to late this, 30s, everyone seemingly smart and nice. I told him about my studio apartment, that there was enough room, that it got good light, about the places I could walk to from the apartment. But there was something else hovering over our conversation, another picture that was not being described. It was what my life would have looked like if things had gone according to plan, and how this
Starting point is 00:47:35 current situation, far from anywhere I'd ever imagined, may or may not have differed from that plan, which might also inform whether or not I was doing okay, and therefore, whether or not my father needed to worry. It was the second picture, this other life that we were talking around, and the extent to which my present life may or may not have varied from it that our conversation was also about. I remember one time when I felt I understood something about one of the other dead spouses. Instead of her spouse, a woman described an electric razor. It had belonged to her husband, and he had used it on many mornings. She used to hate the noise, but now that he was dead, she missed the sound of the stupid thing when she woke up. Somehow, he came alive to me then,
Starting point is 00:48:29 though this detail was routine and did not distinguish him. She held the razor in her hand and flipped it on for us. People want to know what she looked like. Children especially want to see pictures. But in the last five years of her life, my wife's most noticeable characteristics were often related to either cancer or treatment. She lost and re-grew her hair more than once, and sometimes wore a rotation of wigs,
Starting point is 00:49:00 none of which quite suited her. She gained and lost large amounts of weight, and over time her face swelled. When one looks at a picture of her from these years, one often sees a sick person before anything else, while at other times one sees someone vibrant and healthy. I am not sure which version to describe. More variables.
Starting point is 00:49:31 She was 28 when she was diagnosed with stage 4 cancer, 33 when she died. Her driver's license says she was 5'6 and 115 pounds, with brown hair and green eyes. Although the weight was incorrect, perhaps one of those things she had felt out as a teenager and care. over for years. It became correct again as she sickened and then dropped well below that number.
Starting point is 00:49:54 In my memory, her eyes are more brown than the green that was documented. I could say that when she was healthy, her hair was thin, often not much longer than shoulder length, sometimes worn with a headband and usually not long enough to tie up, although I can't even be sure
Starting point is 00:50:10 about this last part without checking photographs. When she was young, her dad used to tease her about having a big head. Sometimes I offer that she was white, but usually I wait until the question is asked. Sometimes I envy the white person with a dead spouse, of whom the question would be less likely to be asked. In her eulogy, I described the thing about her that I found most distinctive. The way the air around her would transform and still, and her entire body react when she felt something deeply. Whether she was encountering a view of the ocean, the dye of a fabric, a memory.
Starting point is 00:50:52 in these moments she might whisper or cry, and I felt that if I touched her skin, she would dissolve into vapor. In those moments, I could also see the young child who had been too sensitive to the world. In family lore, she had been a problem child, emotional and inconsolable, prone to tantrums. A sense of injustice followed her throughout her life,
Starting point is 00:51:17 and still got the better of her sometimes. Perhaps for this reason she was a quick and firm judge of her. character. She gave me a list of people she did not want at her memorial. I can also describe those less obvious distinctions that reveal themselves only after long periods of attention, that she tilted her head slightly as a greeting when she walked towards someone she knew. That in her sleep, she raised her arms into the air and slowly scratched one and then the other. That she became nervous and reached for my hand when an airplane is about to take off. Yet increasingly, these details feel irrelevant.
Starting point is 00:51:58 As time passes, she becomes more to me, the things that made her just like other people. I think of two arms and two ears, and a nose that sometimes ran. She owned socks and scarves, wrapped a towel around herself after a shower, wrote cards, rode the bus, walked around puddles,
Starting point is 00:52:21 opened and closed curtains, listened and asked questions, got hungry and tired, sometimes wore sneakers. She was like anyone else, which is to say that simply by breathing, she created life and atmosphere. This increasingly seems to me the point, the description of the thing itself, rather than what makes it different. I will try to describe one of the happiest days of my life. My partner and I are leaving the hospital. She has been through her first year of surgery, recovery, drug treatment. She holds in her hand the printout of a radiology report.
Starting point is 00:53:04 It describes scanned images of her body, of her head, chest, abdomen, pelvis. The report for each of the four scans gives the following descriptions. Unremarkable. Unremarkable. Unremarkable Unremarkable Unremarkable On this day there is nothing about her
Starting point is 00:53:30 worth describing Alfred Jung Lee is a writer in Iowa City This essay was originally published In The Believer Our version was produced by Diane Wu By shaking on a tree Tell a book by
Starting point is 00:54:19 Looking at the cover Baby can't you see Can't you see Are you a baby? Well, today's show, the person holding the label of producer was me. I was edited by our executive editor, Emmanuel Barry. The people who put today's show together include Fia Bennon, Dana Chivis, Emmanuel Jochi, Cassie Howley, Adrian Lilly, Seth Lind, Molly Marcello, Andrea Marks, Catherine Raimondo, Stowe Nelson, Nadia Raymond, Anthony Roman, Ryan Remory, Ruby Schwartz, Alyssa Schip, Christopher Swatala, are managing. editor Sarah Abduraman, our senior editors, David Kestenbaum and Nancy Updike. Special thanks this
Starting point is 00:55:12 week to Betsy Johnson, Alan Phillips, Lindsay Nader and Marta Himilovich at Autism Speaks, Corey Andreas, Sayun Gong, leading age, Melissa Honig, Eve Honeg, Eve Hila, and the other workers on TPS who shared their experiences with us. Thanks also to all of our This American Life Partners. Their support is an essential part of our budget. as a life partner and you'll get regular exclusive bonus episodes. You'll listen ad-free. And you'll help us continue to make the show. Join at this-americanlife.org slash life partners. That link is also in the show notes. This American Life is delivered to public radio stations by PRX, the public radio exchange.
Starting point is 00:55:58 Thanks as always to my boss Ira Glass. He's off this week working on his new radio show, That American Life. He says our show is old news. I'm like, I already know this. Like, why are we talking about this? I'm Tobin Lowe. Ira Glass will be back next week with more stories of this American life.
Starting point is 00:56:27 This is Ira Glass of this American life. The aircraft carrier USS Abraham Lincoln has been in the news lately because it spent more consecutive days at sea than any aircraft carrier ever thanks to the Iran war. And they've taken a toll on its crew.
Starting point is 00:57:07 Next week on the podcast, We revisit a show that we recorded during another war years ago. But what life is really like on an aircraft carrier. You sleep in a room with 196 other people. There are lots of tedious jobs. Just filling up the vending machines. Is that your full-time job? Yes.
Starting point is 00:57:26 Filling up vending machines all day for 12 hours. That's next week on the podcast or on your local public radio station.

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